When it becomes clear that recovery is no longer possible and a person is nearing the end of his/her life, the focus of care will no longer be on treating, controlling or slowing down the disease, but on ensuring maximum quality of life for patients and their families during the few weeks, months or (more rarely) years that remain. Referred to as palliative care, this approach relies on a holistic and multidisciplinary perspective to prevent and relieve physical, psychological and spiritual suffering as much as possible and, more generally, address end-of-life issues from every angle. All patients faced with a terminal condition (i.e. a severe disease that can no longer be cured and the predictable outcome of which is death) can receive this kind of care, together with their loved ones.
In Belgium, many structures and services for palliative patients have been developed over the years. Since 1997, palliative care networks have also been developed to develop palliative care culture, organise trainings for caregivers, coordinate services across organisations and providers, and evaluate the existing offer.
Palliative home care teams can support caregivers and facilitate the care for palliative patients who wish to stay in their familiar environment. In this setting, care provided by nurses, general practitioners and (partially) physiotherapists is also offered free of charge and a dedicated ‘lump sum’ (‘forfait’) can be claimed twice to help cover additional costs for medication, equipment, etc. When needed, palliative day care centres can offer some relief to the patients’ usual caregivers.
In hospitals, palliative care can be delivered in dedicated units but also in other departments, where tailored care is then provided by a mobile palliative team. This second approach is also used in residential care facilities. Organising this type of care (known as the ‘palliative function’) is compulsory for both hospitals and homes for older people.
However, the aim of this short section is not to assess the palliative care offer in Belgium as a whole, but rather to highlight a few key figures that could alert healthcare providers and decision-makers to issues and areas of concern relating to this type of care and more particularly to its appropriate use. To this end, we will examine the following indicators:
- The percentage of cancer patients who receive palliative care at the end of their life (EOL-1)
- The percentage of cancer patients who died within a week of initiation of palliative care (EOL-2)
- The percentage of cancer patients who received chemotherapy in the last 14 days of their life (EOL-3)
- The percentage of cancer patients dying at their usual place of residence (EOL-4)
Note: these indicators all focus on cancer patients. These results cannot be generalised to all end-of-life situations.
| ID | Indicator | Score | BE | EU-14 | EU-27 | Year |
|---|---|---|---|---|---|---|
| Access to palliative care | ||||||
| EOL-1 | Cancer patients who received palliative care at the end of their life (% of cancer patients with poor prognosis who died) |  |
57% | - | - | 2020 |
| Timeliness of palliative care | ||||||
| EOL-2 | Cancer patients who started receiving palliative care and died within one week after start of palliative care (% of cancer patients with poor prognosis who received palliative care and died) | |
19% | - | - | 2020 |
| Aggressiveness of care at the end of life | ||||||
| EOL-3 | Cancer patients who received chemotherapy in the last 14 days of life (% of cancer patients with poor prognosis who died) |  |
11% | - | - | 2020 |
| People-centred care | ||||||
| EOL-4 | Death at usual place of residence (home or in residential care) (% of cancer patients with poor prognosis who died) | C | 32% | - | - | 2020 |
Percentage of cancer patients who receive palliative care at the end of their life (EOL-1) or die within a week of initiation of palliative care (EOL-2)
While the concept of palliative care itself is relatively simple, there are a number of potential pitfalls when it comes to putting it in practice, not least because it can be very difficult to assess when aggressive curative treatments will no longer make a difference and the focus of care should shift to ensuring maximum comfort and quality of life. As a result, palliative care is sometimes introduced at a very late stage in the disease’s progression or even not at all. In Belgium, this issue might be compounded by the fact that, for financing purposes, patients are recognized as palliative when their life expectancy lies between 24 hours and three months.
The percentage of eligible cancer patients who did indeed receive palliative care and the percentage of cancer patients who received palliative care very briefly before dying can give us an indication of how available and accessible palliative care is in Belgium, but also of how effective the system is at correctly assessing the need for specific end-of-life care (and at swiftly providing it).
However, this information remains approximative, as palliative care does not necessarily show up explicitly in available data. Some deaths can also occur much faster than anyone could have expected, e.g. because of complications or unrelated medical events.
Results
Percentage of cancer patients who received palliative care at the end of their life (EOL-1)
- Of all cancer patients (with poor prognosis) who died in Belgium in 2020, nearly 57% received palliative care.
- This percentage has risen gradually over the years, but this increase is due entirely to the acute forms of cancer. For the chronic forms, figures have remained stable since 2008.
- The likelihood of receiving palliative care depends on the type of cancer: patients with blood cancer, for instance, appear to receive palliative care more rarely than others.
- A higher proportion of cancer patients received palliative care in Flanders (62%) than in Wallonia (50%) or Brussels (49%).
Link to the technical sheet and detailed results
Data source: BCR linked to IMA-AIM data
| Total | Receiving palliative care | ||
|---|---|---|---|
| N | n | % | |
| Acute | |||
| Oesophagus | 7435 | 3537 | 47,6 |
| Stomach | 9875 | 4997 | 50,6 |
| Liver, primary | 6657 | 3377 | 50,7 |
| Gallbladder and biliary Tract | 3567 | 1900 | 53,3 |
| Pancreas | 16271 | 10016 | 61,6 |
| Lung, bronchus and trachea | 68069 | 34662 | 50,9 |
| Pleura | 2523 | 1637 | 64,9 |
| Brain | 6826 | 4608 | 67,5 |
| Acute myeloid leukaemia | 3677 | 1167 | 31,7 |
| Chronic | |||
| Head and Neck | 7238 | 3095 | 42,8 |
| Small Intestine | 1011 | 470 | 46,5 |
| Nasal cavities and sinuses | 535 | 274 | 51,2 |
| Ovary and uterine adnexa | 4269 | 2218 | 52 |
| Multiple Myeloma | 3056 | 823 | 26,9 |
| Acute lymphatic leukaemia | 138 | 35 | 25,4 |
| Chronic myeloid leukaemia | 894 | 202 | 22,6 |
| Total | 142041 | 73018 | 51,4 |
Percentage of cancer patients who died within one week after the start of palliative care (EOL-2)
- Nearly one out of five cancer patients who received palliative care died within a week, indicating palliative care was initiated in a very late stage.
- Here too, there was considerable variation depending on the type of cancer; late initiation of palliative care was least frequent in patients with brain tumours (11.6%) and most common in patients with chronic myeloid leukaemia (32.2%) and other blood tumours.
- The percentage of patients who died very shortly after the start of palliative care was lower in Flanders (16.7%) than in Wallonia (21.6%) or Brussels (22.3%).
Link to the technical sheet and detailed results
Data source: BCR linked to IMA-AIM data
| Patients with palliative care | Died within one week | ||
|---|---|---|---|
| N | n | % | |
| Acute | 65901 | 12341 | 18,7 |
| Oesophagus | 3537 | 670 | 18,9 |
| Stomach | 4997 | 963 | 19,3 |
| Liver, primary | 3377 | 780 | 23,1 |
| Gallbladder and biliary Tract | 1900 | 380 | 20 |
| Pancreas | 10016 | 1863 | 18,6 |
| Lung, bronchus and trachea | 34662 | 6601 | 19 |
| Pleura | 1637 | 231 | 14,1 |
| Brain | 4608 | 534 | 11,6 |
| Acute myeloid leukaemia | 1167 | 319 | 27,3 |
| Chronic | 7117 | 1372 | 19,3 |
| Head and Neck | 3095 | 574 | 18,6 |
| Small Intestine | 470 | 100 | 21,3 |
| Nasal cavities and sinuses | 274 | 46 | 16,8 |
| Ovary and uterine adnexa | 2218 | 358 | 16,1 |
| Multiple Myeloma | 823 | 222 | 27 |
| Acute lymphatic leukaemia | 35 | 7 | 20 |
| Chronic myeloid leukaemia | 202 | 65 | 32,2 |
| Total | 73018 | 13713 | 18,8 |
Percentage of cancer patients who received chemotherapy in the last 14 days of their life (EOL-3)
As mentioned above, the main goal of palliative care is to ensure the best possible quality of life for patients who are near the end of their life. Usually, this also implies that aggressive curative treatments (which often come with side effects) are stopped, and the main focus of therapy shifts to keeping the patient comfortable by alleviating pain and other symptoms. The percentage of cancer patients who still received chemotherapy in their last two weeks of life is an indicator of (inappropriate) aggressiveness of care in terminally ill persons.
Results
- At least one out of ten Belgian cancer patients received chemotherapy in the last 14 days of their life, with limited differences between regions; this proportion has remained approximately stable between 2008 and 2023.
- The percentage of patients still receiving aggressive treatment at the very end of their life varies considerably depending on the type of cancer. Overall, it is higher in blood tumours than in other types.
Link to the technical sheet and detailed results
Percentage of cancer patients dying at their usual place of residence (EOL-4)
Many studies and surveys have shown that most people would like to die at home, and palliative care services in Belgium are trying to take this preference into account by providing maximum support for patients and relatives in this setting. The percentage of cancer patients who die at their usual place of residence can give us an idea of how well this objective is met; this indicator relates to the people-centredness of care. This is an approximation, as the exact preferences of individuals are not known.
Results
- In Belgium, about two thirds of cancer patients die in hospital, 23% at home and 7% in residential care. The percentage of deaths at home has remained fairly stable between 2008 and 2019 before showing a sudden increase in 2020 (from 23 to 29%), probably due to the COVID-19 pandemic.
- Cancer patients die at home more frequently in Flanders (30.8% in 2020) than in Wallonia (27.1%) or Brussels (19.1%).
- In 2020, the percentage of patients who died at home was lower for chronic types of cancer than for acute types (19.4% versus 29.9%).